View Full Version : YOUR HELP IS NEEDED PLEASE VOTE
05-07-2007, 05:47 AM
there has been a recent post, pinpointing the cause of lupis, i personally have never had doctor tell exactly tell me what causes it, in fact when i pushed for an answer they told me, to give me one would be almost impossible due to the variety of envioromental and chemical factors, after reading and investigating ive come up with several possible culprits but no definite cause, Im intiating this poll in order to help this young person to make an educated descision
05-07-2007, 06:46 PM
I wasn't sure how to register my vote, but I agree with those who said that there is no known cause. However, here is something for all of you to consider. I was raised in a small Illinois town which was surrounded by oil refineries, a chemical plant, a glassworks, an ammunition plant, etc. When I attended my 30th class reunion (yes, I'm feeling old), my friend and I sat and discussed the HUGE number of us, all from the same little town, who are having these symptoms. Her Dr. has mentioned and ruled out arthritis, MS, Muscular Distophry, etc. There are several of our classmates who have either died of cancer, or are currently fighting it. I'm wondering if several of us might have Lupus, and if the environment in which we grew up might have something to do with it?
05-08-2007, 12:03 AM
Hi magistramarla, that's very interesting. I wouldn't be surprised if there were some kind of correlation there.
I'm the (not so young! :cry: ) woman Terry is referring to. I just wanted to clarify (in case you didn't feel like wading through my second 'newbie and now surgery?' post) that my rheumie had actually said that I have a general predisposition to develop autoimmune diseases and the presence of the implants merely catalyzed or exacerbated the onset of the lupus. Again, it could have easily been another (environmental, hormonal or genetic) trigger. I guess his point is that some people have the bad luck to be born with an unusual vulnerability towards certain triggers that most other people tolerate easily. Of course I resist this in part (why me? so many other women have no problem with saline, etc, etc) but then again there ARE people who will go into anaphylactic shock just by eating nuts, while most of us happily eat them all the time.
So, while the implants may not be the definitive *cause*, I guess his point is that they are a very real factor in the worsening of the disease. Anyway, I just wish I knew.
05-13-2007, 11:23 AM
I used to work w/chems too. I was a carpet cleaner for 3.5 yrs.
Another possibility.. I over-worked myself - I worked 16-hour days in 110° weather, (AZ) in vacant, un-a/c'd, apts.
So, maybe (I think) I turned my body into overactive mode. Which means, everything inside my body is over-working too. So, my stomach doesn't digest and absorb all the nutrients when I eat, and so-on.
So, (sry for the so's) it's not the cells eating each other. It is cuz they die from over-activity.
Just a guess.
05-14-2007, 05:31 AM
just out of curiosity, did you work with naptha???
05-15-2007, 11:09 AM
Who? What is that?
05-15-2007, 11:31 AM
So, my stomach doesn't digest and absorb all the nutrients when I eat, and so-on.
So, (sry for the so's) it's not the cells eating each other. It is cuz they die from over-activity.
Brian--I have had this same thing. Docs had no idea why--is this linked to lupus, too? Docs say it seems cyclical--some months my levels are relatively normal, and others are through the floor (nutrient-wise).
I seem to lack in protein, B's, K, E.. I forgot all of them... I am allergic to vitamin K (IV)--I coded on it before... so there is no way to supplement it other than by what I eat--but if there's no absorption, I am "outta luck".
Is yours cyclical, too?
05-15-2007, 11:40 AM
naptha is basically jet fuel, thats was used for dry cleaning, paint cleanup,mostly militarily based
05-15-2007, 11:58 AM
To: ChiChiBug: You're right,, I'm guessing your flares are in summer.
If that's correct; summer is a perty active season. The heat plays a major factor on your body's interior. Your also prob. thinking about vacation, the kids being home, etc.. If you think about it, you do more in the summer, and don't give urself enough r&r to heal back to slo-mo.
I strongly believe (at least for myself) it is over-activity that's doing harm.
Even if ur not doing something physical. It could be mind overactiveness, (thinking, stress) Or even something alotta people do without knowing it: tense up. I still catch my self not fully relaxing. I always keep my shoulders tense up, when they need to drop and relax. Like I said jus' a guess.
To Teriod: I don't remember hearing Naptha, but I worked w/dry cleaning chemicals, dye's, deoderizer, shampoo, "kool-aid" remover. Alot of different chems.
05-15-2007, 12:08 PM
Brian, that's very interesting. My husband and I have always correlated my flares with my "working like crazy" or "crazy schedule time". He is trying to get me to put aside an hour a day to "relax". I can't do it... ;) He says that posting on the boards or working on the computer doesn't count LOL.
My youngest daughter leaves for college in August... my life will most certainly slow down by then... meanwhile, these next few weeks are horrendous. ;)
Thanks for your ideas, they make sense to me!
05-15-2007, 12:27 PM
I think you can do it.
Or, I'll tell you how I handled it....
Just like you.
I did nothing.
I thought it would pass.
I was peeing blood.
I was immobile.
People thought I was faking when the pain got worse.
People thought I needed attention.
Nobody beleived me.
No doctors, No family
It got worse.
I was miserable...
What I'm trying to say is.. whatever is holding you back from slowing down isn't worth it.
05-15-2007, 01:31 PM
I think between you and my husband, I might get the message ;)
If you read my poll question re: sleep deprivation/stressful life, you can see that I've been programmed from a young age to be always on my toes, always busy. It's a hard mold to break.
I am trying. I swear ;)
I appreciate your honesty SOOO much!!!
05-15-2007, 07:48 PM
I know what you mean about work and stress! I REALLY have a stressful job. I teach in a HUGE high school. I leave for school at 7a.m. and usually get home at 6 p.m. Then after cooking dinner (my husband cleans up, but no one wants him to try cooking, for the health of all concerned), I sit down to grade papers with my loving cats by my side. The students are very hard to deal with and the administration has been putting a lot of pressure on us teachers to do EVERYTHING. I've just stopped going to my duty post at lunch time, since the noise and the stress of the students at that time of the day would set off my tintinitis (from Menier's Disease). Besides, how could I do anything to break up a fight - I'm way too weak. The thing is - I LOVE to teach. I have a few really good students who make it all worthwhile, so I hang in there for them. I did notice that I had a flare-up of sores on my arms when I was stressing out about administering AP exams last week.
The summer won't be much more restful for me. I have neglected my house for months, and just lost my housekeeper a few weeks ago. I have five grown children, but believe me, the stress doesn't end when they grow up - it just changes. Two of them rely upon me for child care during the summer, so I'll be spending the summer with an 8 yr. old and a 2 yr. old, all the while trying to finally get to see a rheumatologist.
Thank goodness for my two planned trips - one to Nashville for the American Classical League Convention; and the other to "Latin Teacher Camp" - a whole week on a college campus with no one but myself to look after and lots of Latin to read - BLISS.
I haven't figured out how to slow my life down yet. I guess I'm still going on the premise that Brian mentioned - I'll rest when I die.
05-15-2007, 10:22 PM
woah, hey now, if u read all the way through, u'll know it wasn't a good thing.
05-15-2007, 10:34 PM
ChiChiBug,.... EXACT SAME thing here. My grandmother is like that, and so is my mom... Post-transplant made me thing ALOT. I think I was in the hosp. a total of only about 7 months. Anywayz, during the thinking I thought alot about what the doc's keep saying. " U have an overactive immune system," and I realized i was doing alot. I worked, on average, 10-hour days, then came home, showered, left w/friends till whenever, sleep whatever few hours, then back at it. I wasn't eating on bad schedule, and doing a job that wasn't fit for me (carrying 50-60lb. machines to the 1,2,3,4th floor vacant apts, then down, up.....
But, again, newayz, now that I've realized it, I'm trying to preach and speech to my mom who cannot stop moving.
05-16-2007, 09:20 AM
Your schedule sounds much like mine was years ago--and I had to stop because I got sick. I don't try to do all of that anymore (see? progress!)
I have to run, but wanted to say "thanks" for your support :)
05-19-2007, 08:18 PM
Hey folks, check out this article at http://www.boston.com/news/local/articles/2007/05/18/study_finds_boston_lupus_rates_highest_in_roxbury_ mattapan/
It deals with the conversation that we were having about those of us like Brian and myself who have been exposed to chemicals. I've already sent it to my friend in my hometown. I would love to see what the folks on this list have to say after reading it, especially you, Brian. Please let me know.
05-22-2007, 09:00 AM
I found the article to be very interesting. Many doctors have said that environmental factors do play a part in the development of Lupus..especially if there are high concentrations of chemicals and toxins! Since African-Americans are more predisposed to developing Lupus, it is not surprising that being exposed to these conditions in the neighborhoods where we live makes us even more vulnerable.
The only part that I don't agree with is the part that the environmental exposure has decreased because air emissions and other environmental standards are much more stringent today. That sounds, to me, like industries attempting to mitigate their responsibility in order to lessen their risks for law suits!!
The article did not addres the issue of what is going to be done to help those people who have lived in those areas and developed Lupus...I wonder if anything will be done???
05-22-2007, 04:53 PM
Much of what you said has been on my mind, too. If you read my earlier post, you saw that many of my classmates from high school have many of the same symptoms that I have. I wonder whether Hartford Illinois might be a great study case for them? I also wonder whether the oil companies would ever be held accountable? One thing that might prove interesting in such a study. They could never give the excuse that it is a "black woman's disease". At the time that I lived there, Hartford did not have a single black family. I really was upset seeing this excuse given in the article. The chemical and oil industries really do try to blame race, sex, or economic status rather than accept the blame themselves. I'm going to pass this info along to the author of the article and suggest to him that he might see if a colleague at The St. Louis Post Dispatch might be interested.
Thanks for the comments.
05-23-2007, 10:05 AM
Please keep us advised of what (if any) response you get from the author. I am very interested to hear what he and his colleagues say!
Peace and Blessings
05-23-2007, 11:47 AM
I was raised in a small town in Southern California--no industry, no nothing... and was having symptoms before I was 14. I didn't smoke (but my father did), didn't have any experience with chemicals (not even much in the way of cleaning supplies), with the one exception of mercury in a thermometer--one broke when I was in early elementary school and I played with the "weird metal stuff" for a long time before my mother found me and made me clean it up... I remember she was really freaked out, but until now I forgot all about it.
I have heard some people link autoimmune diseases to immunizations (but what's the alternative?), and flares to those new mercury lightbulbs. (We just changed all of ours back to incandescent... and what a difference--my head doesn't hurt!!) I know for sure that when I go into Home Depot or Lowes/Wal Mart, etc., some days I get downright dizzy due to the lights.
I know that there are many of us in my age group that have had similar symptoms... all from the same town (or like towns) with no exposure to industry.
I read a study once about overhead power lines causing cancer--could they also have something to do with this? Also, I read a study once that said that living at high altitude can open you up to more free radicals (my doctor verified this)--I now live at 5200 feet and after I moved here was when I got "sick enough to be diagnosed and disabled". I grew up at just above sea level, so that doesn't work for time of "getting sick" but certainly might have something to do with getting sicker...